Thursday, October 25, 2007

Copycat Jenny

One of the things that bugged me the most about the whole buzz about Jenny McCarthy's recent mediastorm, was the fact that, while people insist that she is bringing a "new message" of hope and autism treatments, her book is talking exactly about the GF/CF and antifungal therapies already described on Karyn Seroussi's book "Unravelling the Mistery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery", published SEVEN YEARS AGO.

Of course Jenny has an interesting personal story to talk about and she is entitled to write a book whenever she wants. But please, don't come and tell us that you're doing something no one else has done before. The main difference is that Jenny is a celebrity. I just don't think it is fair for her to take credit for the work that had already been done by Seroussi and other people who'd done original research and previously published about GF/CF diets and antifungal treatments as a possible treatment for autism.

And it seems this is not the first time that Jenny copies somebody else's book idea and uses her celebrity status to try and make money by writing a similar story. That happened when she wrote "Belly Laughs" (2004), which was supposed to show the real, funny and goofy side of pregnancy - something already achieved by Vicki Iovine's bestseller "The Girlfriend's Guide to Pregnancy" (1996).

If I were one of those two original writers, I'd be pissed to see some celebrity taking credit for my ideas. In any case, I don't recommend the original books either. Seroussi still talks about the MMR and opioids effect as if they were true (by now these theories have been disproved by real scientists), and she's a GF/CF fundamentalist. And Vicki's book, although funny, is out-dated and irrelevant.

Monday, October 15, 2007

Farrell proud of his beautiful boy

Sometimes beautiful things come from where you don't expect... In this case it was bad boy actor Colin Farrell, who seems to be a wonderful Dad to his 4-year-old son James, who has a form of cerebral palsy, Angelman Syndrome. Here's what Colin has to say about raising a child with special needs (from The Independent):

Colin – who has starred in such movies as Miami Vice and Phone Booth – said that James has “enriched” his life “incredibly.”

And he said that he is dedicated to helping his son reach his own “individual potential” and to be “as happy as he can be.”

”With my son the only time I'm reminded that there is something different about him – that he has some deviation of what is perceived to be normal – is when I see him with other four-year-olds.

“Then I go “oh yeah” and it comes back to me. But from day one I felt that he's the way he's meant to be.”

The actor spoke with pride about the barriers his son has overcome in the first four years of his life – and paid tribute to his exgirlfriend Kim for being proactive in getting James the early intervention he needs.

“He took his first steps about six weeks ago and it was four years in the making. All the work is his, he worked his arse off for four years.”

“And when he took the first steps it was incredibly emotional, there wasn't a dry eye in the house.”

He's broken that barrier and its all about building on that now.

Although Colin has been juggling a career in Hollywood since he first burst onto the scene in 2003, he is dedicated to spending as much time as possible with his son.

Little James has already met with his extended family in Dublin and even Colin's new girlfriend, Irish student Muireann McDonnell.

The irony of having a child with special needs – months after becoming involved in the Special Olympics and being faced with the same challenges – is not lost on the actor.

But, he is adamant that anyone who has a disability can still contribute to society and have a full and happy life.

“Its mad the way the world works. It's bizarre. I experienced the overwhelming effect of being around those athletes pretty much just before my son was born with special needs.

“I have never thought of my son as being someone with a disability. It goes back to special needs and what is a disability and what isn't”.

Thursday, September 27, 2007

How do you spell _________?

That's my 4-year-old son's most frequent question these last few weeks. He's obsessed with letters and spelling (and now with writing too). So lately he's been asking me to spell the darnest things for him, like "Whoa", "Ummmm", and "Dying" (he doesn't know the meaning of that word, but he heard it on a Wiggles' song that he loves, "Gypsy Rover"). I didn't want to teach him that one, for fear that he'd repeat that aloud in his preschool in front of teachers and other children.

By the way, if you have a kid at home with any degree of hyperlexia, or who is starting to learn how to read (and loving it) you have to go to this website: Starfall. All teachers swear by it, and we surely agree it's wonderful. In my case, it's a way to help my son pay more attention to a narrative, since the stories are animated and interactive. Besides, he'll be able to realize that each letters' phonic sounds combined make a word, so he doesn't need to rely on visual memorization alone, he'll be able to read novel words.

Tuesday, August 7, 2007

What an artist!

This is my son's drawing of his favorite toy, TJ Bearytales (below). The boy is only 3 years, 10 months old...

Thursday, August 2, 2007

Lead Scare

I think my son was autistic from birth. I don't believe in the vaccine-causes-autism theory. But I have to admit, the lead recalls that have affected some of my son's toys scared me enough to call my son's pediatrician and request a lead test. My son was always big on toy-chewing. The doctor agreed right away, it doesn't hurt to be on the safe side.

But then, what if he's lead-poisoned? Not only that will make me very worried about his health, but also - argh - my son will have to be treated with chelation. If that's the case, I hope there will be bona-fide doctors that can provide this treatment, and we won't need to rely on some creepy DAN doc.

Thursday, April 26, 2007

Awareness - not just about severe autism

Recently after ABC's The View and MTV's True Life shows focusing on autism, I've been hearing a lot of parents complaining that the media is not showing more severe cases, with kids displaying more extreme behaviors. "They have to show what real autism is", said the mother of a non-verbal teenager that I know. However, I think the problem is quite the opposite. Before I had my own child diagnosed with autism, this is what I had learnt from reading newspapers and magazine articles, and watching movies and TV shows: autistics will not give you eye contact, do not show affection, rock their bodies and flap hands, hit their heads on the wall on purpose, and have little or no language. So when my child showed NONE of those characteristics, but yet had a very strange pattern of language development (echolalia), and did not point to show and make comments about his interests, I thought he had some kind of speech delay, and an independent personality, but autism was the farthest thing from my mind. "He gives me great eye contact, he hugs and kisses people all the time, he doesn't bang his head, he turns to us when we call his name, he doesn't get overwhelmed in crowded or loud places, there's no way he's autistic!" I thought to myself, after reading a few articles about the disorder. As a matter of fact, one speech therapist saw my son at 2 1/2 years old - when I was worried that he still didn't talk in sentences or answered to questions - and she thought he was a neurotypical that would just turn out to be a late talker.

It took a chance encounter with an elementary school teacher a couple of months later to open our eyes to our son's autism. He was a friend of a friend who happened to show up at our house, and expressed his concern to my husband when he noticed my son's repetitive play, scripted language, and aloof manner. That same week, the teachers at his preschool told us that while our son was very sweet and well behaved, and extremely smart with academics, he was always playing by himself and not engaging enough in communication with the teachers, and had a significant language delay. They didn't know what his problem was, but they urged us to seek an evaluation. We asked the pediatrician for an urgent referral, and meanwhile started researching feverishly on the internet. On the more informational websites, we could confirm that my son's autism should have been obvious all along, with the narrow interests, lining up of toys, echolalia and scripted language, hyperactivity, perseverative and repetitive behaviors, etc. Even his uncanny ability to read letters and numbers at 2 years old was very common in autistic kids! We didn't need to wait to hear the official diagnosis a month later; we knew right then he had autism.

Unfortunately, the more comprehensive lists of symptoms can only be found on websites that are read mostly by people who already suspect their child is autistic. Those symptoms are not common knowledge and very rarely the TV shows and magazines will talk much about the most subtle signs. The stereotypical image of autism IS the severe end of the spectrum, and very few people in the world know what moderate to high functioning autism looks like. And that's precisely the reason why so many children are falling through the cracks and not receiving the early intervention that they need in order to develop to their full potential. If I'd known more about all symptoms of autism, I'd have been able to diagnose my son as early as 12 or 18 months old! Instead, by the time we found out, he was almost 3; by the time bureacracy allowed, he only started receiving special education for autism at 3 years, 2 months of age.

The fact that some kids are not obviously autistic to their families and peers will also make these children vulnerable to abuse. Parents will think they are defiant or inconsiderate; peers will call them dumb or crazy. So, as we're almost at the end of Autism Awareness month, I hope that more and more people are learning that autism is a spectrum where even the most "high functioning" individuals will have to face extreme difficulties and challenges, and will need a lot of support and understanding. I hope that more educators and therapists will be able to spot the early signs of autism so our children will have more time to "catch up" on their development.

Sunday, March 25, 2007

Show me a garden bursting into life

My 3-year-old son always loved music, especially from his children's CDs and videos, but he never seemed interested in pop-rock songs I listen to on the radio (we do a lot of driving together). The other day he surprised me by protesting with a loud grunt when I changed the dial from a station that was playing the ballad "Chasing Cars", by the Irish band Snow Patrol (see video below). I switched back to that song and he was all happy again. He'd heard that song in the car with me probably about 5 times in several months, but it was enough to make an impression on him. He seems to like atmospheric, melancholic melodies. When we got home, I downloaded the song in iTunes and played it loud from the computer. He came running and smiling from the other side of our house, as soon as he heard the first chords. And started dancing and jumping on the bed. When the song was over, he said to me: "Wanna play it again?"

Friday, February 16, 2007

Good motor skills = Better outcomes?

To be honest with you, at this point I'm not sure if I'll commit to this blog or not. I created this blog mainly so I can comment on other people's blogs that only allow Blogger or Google posters (can't they learn how to change the template?). Today however I have come across a very interesting study from the University of Connecticut that suggests what types of autistic kids have a better chance to become higher functioning and even lose the diagnosis:

Abstract: A diagnosis of autism spectrum disorder (ASD) is usually taken to be permanent. In this study, 13 two-year-old children with ASD lost the diagnosis by age 4, at which time they scored within the normal range on standardized measures of cognitive and adaptive functioning. No differences were found in symptom severity, socialization, or communication between children who lost the ASD diagnosis and children who did not, but children with PDD-NOS were significantly more likely than those with full autistic disorder to move off the spectrum. The clearest distinguishing factor was motor skills at age 2. Results support the idea that some toddlers with ASD can lose their diagnosis and suggest that this is difficult to predict.